bizzie lizzie

A post from Lizzie's daughter to her wonderful support group

2012-01-06T13:31:34Z

Hi everyone,

This is Lizzie's daughter, Debs, here.

Mum, or Lizzie as you all knew her, sadly passed away on 29th September 2011. I hope you don't mind me logging in to her account but I know what a fantastic support group you all were for her and I know it really helped her being able to talk to other people going through similar experiences - she drew a lot from being out to share her thoughts and feelings.

As you'll see from her last post, she was doing really well and we were positive that although she may need further treatment at some point, she was strong and feeling good about the future. However, very suddenly she haemorrhaged and was taken into hospital. Despite more than a week of treatments to bring up her platelets and white blood cell count, her body just wouldn't respond and she grew very weak as the cancer took hold very quickly. I think her body had just been through enough and although her fighting spirit didn't diminish, towards the end she simply had had enough and said she was ready. It was a shock as I saw her the weekend after she went into hospital, when she did seem tired and weak but still positive, but by the Wednesday my dad called me to say she only had days left. I rushed straight home (I live in Leeds) to Kent to the hospital and managed to have one last wonderful conversation with her. She passed away the next day surrounded by my dad, me, my two brothers and her close friend Trish. I'm so glad we were with her at the end and I think she was too.

I just wanted to thank everyone on here who knew my mum or just read her blog from a far, for being there for her over the last few years. She truly was an amazing, gorgeous, warm, positive and loving person. She was my best friend and always will be.

I wish you all well with your treatments and hope that you still draw strength from her words and her blogs; she could always see the positive in everything and was so thankful for all the little things that most of us take for granted.

Thanks everyone,

Debs

Handshakes and coffee cakes!

2011-06-14T16:01:44Z

Well I saw my consultant yesterday for the results of my scan and was pleasantly surprised that nothing has really changed from the last one. There is a small mass (1.5 cm) low in the pelvis and an enlarged lymph node in the same area that is a matter of millimetres.....and that is it! I have no pain or other symptoms, apart from the muscle pain in my legs from the Taxol. He felt my tummy, shoulders and neck, pushed all the way down my back, listened to my chest and pronounced everything normal. Phew!

I will have another scan in three months time and was told if I should notice anything before then to contact them straightaway and they will bring the appointment forward. Then it was handshakes all round and my husband took me to a lovely coffee shop where I had a large creamy coffee and slice of coffee and walnut cake. Delicious!

Very best wishes to everyone and I hope the sun is shining where you are.

Lots of love,

lizzie xx

CA125 on the rise - not a surprise!

2011-05-09T17:17:23Z

Hi all,

I saw my lovely consultant today for my 3 monthly check. My CA125 has risen from 19 (which was right after finishing chemo), to 71. I have been feeling quite well, apart from muscle pain in my legs, a legacy from the Taxol, but was prepared for a rise, such is the nature of this disease.

My consultant was going to request a scan for me at the end of June, whether the CA125 had risen or not. This is because I am on "active surveillance" which I find very reassuring. I am quite content with the situation at the moment because I am feeling well and the results could have been much worse.

So, on we go, loving the sunshine, enjoying life and looking forward to my youngest son's wedding in August.

Take care and feel well,

Love lizzie xx

PHEW!

2011-02-21T20:36:53Z

Hi all,

It has been a bit of a nervous wait for my consultant appointment. Although I try to stay positive i wasn't too sure if the recent lot of chemo had made a real difference. However, I am glad to say that the cancer has been greatly reduced, it does not affect any organs and the CA125 is 19. PHEW! I am feeling well and do not need any more treatment at present but I will have a checkup and blood test every two months. My consultant had already told me that they are looking to control the disease rather than cure and judging by these results, they are. The longer they can control it, the more chance there is of new, even better treatments coming along and I will hold on to that thought as I continue to enjoy life with my wonderful family.

My very best wishes to all of you, stay strong and keep smiling.

Love and hugs,

lizzie xx

Freedom !

2011-01-10T10:30:05Z

Had my last session of chemo on 6th January and oh, did it feel good to know it was finished, (hopefully for a long time, although I will need more at some stage). Anyway, I am feeling good right now and have a CT scan booked for 11th February followed by a meeting with my consultant on the 21st to discuss the results. I am experiencing quite a sense of freedom at the moment, because I have had to have weekly blood tests and chemo each week, for three weeks out of every four since last June and it takes over your life to a great extent. Now, I can relax and do what I want, when I want and it feels great.

Very best wishes to all.

Take care and stay strong,

Love lizzie xx

It's snow joke............

2010-12-01T09:38:46Z

Hi all,

Well we in Kent have joined the rest of the country under a blanket of snow. I had my second chemo of cycle 5 yesterday and my lovely friend who drives me and my husband to all the appointments was determined I would get to the hospital in Maidstone. It took 35 minutes to get to the end of the next road from our house but we persevered and arrived only 15 minutes late. My treatment was started almost straight away (no low neutrophils this week thank goodness) and it all went very smoothly. I think it would have been a different story today as it is extremely treacherous (where are the gritters?) The staff at the treatment center are wonderful and some of them had very long journeys into work in adverse conditions but thank God for them I say.

I hate this weather, the only snow I like being the stuff in those snow globes that you shake. I have loved these since I was a little girl and while shopping the other day, saw a lovely Christmas one which was beautifully decorated and quite inexpensive....so I treated myself! Later at home I was engrossed in my new purchase and didn't hear hubby come in. When he saw what I was doing he had a good laugh and made some less than complementary remarks which I ignored of course. I put it down and went into the kitchen to make some tea and when I returned, guess who was totally absorbed in shaking the globe and watching the snow whirl around. He didn't even realise I was there until I spoke although he did have the grace to look somewhat embarrassed.

Anyway, I have 4 more chemo sessions to go, which, barring any delays should finish the second week of January, followed by a scan in early February and then see the consultant for the results.

Love and best of luck to you all, whatever your circumstances,

Take care and keep smiling,

Love lizzie xx

You've gotta do what you've gotta do !

2010-10-26T16:33:55Z

I should have had the last chemo of cycle 4 today, but received a phone call last night to say it was being delayed a week due to low neutrophils. Then , this morning I got another call asking me to come and have a blood test to see if I could have chemo after all. They were sorry to mess me around, they said , but the pharmacy had specially asked if I could come in. So off I went, had another test and..... still too low! What a surprise. I didn't really think things would have improved enough in that short space of time.

Anyway, the chemo nurses seemed to think that my neutrophils are finding it hard to recover as I am having chemo every week and they also want me to rest more, especially a couple of days before the blood test. So I'm on my snuggly sofa, feet up, in front of the fire and with a glass of something nice. It's hard but you've gotta do what you've gotta do! Fingers crossed for next week.

Take care all,

Love lizzie xx

On an up !

2010-09-20T16:52:48Z

Saw my consultant on the 13th and had everything crossed that the CA125 would have gone down. This was the first time it had been tested since starting this particular treatment and ....oh joy...it had decreased from 219 to 31 after 2 cycles! He was very pleased with my overall health and it was nice to leave the hospital with a smile on my face.

This smile got even bigger when our lovely daughter arrived for the weekend, accompanied by her (fairly new) boyfriend who we had never met. He was a bit nervous at meeting all the family , but he is so nice and we all had a wonderful time.

So at this point on the rollercoaster that is cancer, I seem to be on an up and long may it continue!

Take care and feel well

Love lizzie xx

A small moan.....

2010-08-24T17:25:48Z

I was disappointed to receive a phone call from the chemo clinic yesterday, cancelling my chemo session today due to very low neutrophils. They were supposed to ring today with a new appointment for next week but no word yet. I know this is a common reason why treatment is delayed but it was the last chemo in cycle 2 and it was supposed to be done and dusted with a break to look forward to next week and then a consultant appointment and on with cycle 3. I think when you look at your chemo schedule written down you place a lot of importance on every session going to plan because so much rests on the outcome. However, life doesn't go to plan, as we all know, but a glitch in the treatment , however small, produces a stronger reaction, purely because cancer is an emotional rollercoaster.

I am a positive person but as I have said to others, come on here and have a moan because people will understand and it will make you feel better. So this is a small moan and now, onwards and upwards! I will look forward to all the family coming at the weekend for my birthday. It will be so lovely to see everyone and I feel better just thinking about it.

Take care and feel well everyone,

Lots of love,

lizzie xx

From chaos to calm

2010-08-10T17:39:44Z

Hi all

Was due to have the first chemo of the second cycle today. Woke up to pouring rain this morning, typical as I had done a load of washing to leave out while at the hospital. Then I drove my son to the train station in what appeared to be monsoon weather and as he got out of the car my mobile rang, " Quick",said hubby, "Come home now, the hospital have just rung and they want you to have another blood test as the one you had done yesterday was inconclusive !". "Oh sugar" I said (and if you believe that you'll believe anything)Luckily, my very good friend who insists on driving me to all my appointments came early and off we went. Wouldn't you know, because we wanted a quick journey. we found three lots of road works that were not there on the previous visit and the inevitable delays.

Finally got to the hospital, had blood taken and was set up for chemo as they were hopeful I would have it. My neutrophils were 1, which is borderline and they wanted to see if they were going up or down. The result came back at 1.35 so it was up to the doctor to make the decision. That took longer than the blood result, but eventually Sue, the Sister,who is a very funny lady and keeps us all laughing, came over and stood in front of me with the phone to her ear. After several seconds she raised her arm in triumph and said "The man from Delmonte, he say YES ! Cheers all round the room and great relief for yours truly.

After that, chemo went without a hitch and I was back home by 2.30pm, eating a chicken salad sandwich and having a much needed mug of tea. Oh, forgot to mention , the dog had also suddenly developed a swollen eye this morning and as she has to have allergy injections that was another thing to worry about. However when we got home the swelling had disappeared and she seems fine. Now, all is calm Here's to next Tuesday when we do it all again (without the chaos please).

Love to all.

lizzie xxx

The army is on the march!

2010-07-14T07:17:33Z

I started my new chemo regime yesterday and it went very well. I say new, its the carbo/taxol that I have had twice before but given every week for 3 weeks instead of once every 3 weeks. The fourth week is a break from chemo (although I still have to go to the hospital to see the consultant) and then the cycle starts again. I was booked to have a pre-chemo chat beforehand, but was told I didn't need it as I am an "expert" at having chemo. I must say that on my list of "things I would like to be good at", having chemo wasn't one of them! However, I am feeling quite uplifted this morning as I like to think of the chemo drugs as my own private army, charging round inside me. overpowering and then getting rid of this nasty invader. Holding on to that thought, I send very best wishes to everyone in Macland and hope today is a good one for you all.

Take care and feel well,

Love lizzie xx

Third time lucky!

2010-06-29T17:25:06Z

Saw my consultant yesterday and told him my decision was to have carboplatin and taxol weekly (three weeks on and one week off will be one cycle) The CA125 will be checked after cycles 2 and 4 and if that is improving I will have two more cycles so six in all. This will be the third time having carbo/taxol so keeping everything crossed that it works! Of course, my hair will go again so I think a new wig is needed as I have had the same one for over three years. It is a very good one but time for something different methinks!

Our lovely daughter came with us to the hospital this time and met the consultant. She lives in Leeds and although she speaks to me on the phone everyday, I think she feels far away from the situation. I had to tell her and her two brothers recently that the hospital is looking to control my cancer rather than cure it and this was very hard for them to hear. They know , however, that I will never give up and are heartened by my optimism.

So it was back to the hospital today for a GFR test, to check my kidney function ...I didn't expect that to happen so quickly but once a decision is made, my consultant tends to act fast! Now I just have to wait for my chemo schedule and then off we go, kicking this disease into touch.

Lots of love to all,

lizzie xx

Decisions, Decisions !!!

2010-06-14T17:08:32Z

Hi all,

I have seen my consultant today to get the results of my CT scan and the news is not so good. The Caelyx is not working and so the remaining cycles have been cancelled. I now have three options to consider before returning to see him on 28th June.

Firstly, he would be happy for me to have a break from chemo for a few months, especially as I feel good and my energy levels are fine. I would be regularly monitored with blood tests and scans throughout. Option 2 is to test my original cancer tissue to see if it is hormone receptive and then have Tamoxifen tablets. If anyone has taken Tamoxifen for ovarian cancer I would be interested to hear about it. Option 3 is to have carboplatin/taxol again but instead of one cycle every 3 weeks it would be once a week for 3 weeks and the 4th week off. Decisions, decisions!

I know the choice has to be mine but I would value your comments. Whatever I decide , the fight continues because I will NEVER give up.

Lots of love to you all,

lizzie xx

Keep smiling....

2010-05-19T15:40:03Z

Following on from Monday's blog, I phoned my consultant's secretary this morning to get the latest CA125 result. I had had a test done at my local hospital last Mon and it was 234 (before starting treatment it was 202) and my consultant wanted another one done at this hospital where I have my treatment. Anyway, rang the sec, lovely Sarah and the result was......342. What!.....deep breaths lizzie, relax. I promised myself I would not get het up over these numbers, So I thanked her and then calmly went off for my 3rd lot of Caelyx.

The rest of my bloods were fine and the chemo went very well. The atmosphere in the chemo suite is always uplifting and there was a lot of laughter today. My chemo was administered by the lovely "Juan", who is Spanish with dark curly hair and big brown eyes (I didn't get too excited, hubby was with me) .

So I may be having a scan sooner rather than later, but that's fine. I am feeling well and enjoying life and that is the main thing.

Lots of love to everyone,

lizzie xx

Bit of a funny day......

2010-05-17T15:22:37Z

Hi all,

Bit of a funny day today or maybe my expectations were too high. I have been to see my consultant and was hopeful that my CA125 had gone down after 2 cycles of Caelyx. It was 202 before starting treatment and now it is 234. "Oh ", I said "it's gone up!". "No" said my consultant, "A rise like that is nothing, it's stable". Previously, on carboplatin/taxol, there had always been a considerable drop and I suppose I was expecting the same this time.

Then the consultant said that , because I had had the CA125 done at my local hospital he wanted another one done at this hospital where I have my treatment. According to him, the test result can vary from hospital to hospital which quite surprised me as I thought they would be standard wherever you went. He then said that if the result was similar I would not need a scan in the near future but should there be any surprises i.e much higher, I would have a scan in the next few weeks.

I have had previous scans at my local hospital and this hospital but he wants me to have the next one at the same place as the last scan I had, because he needs it to be on the same machine as they too can vary! Has anyone else been told this?

Anyway, I was feeling a little bit down when I left the hospital (especially as it started to pour with rain), but by the time I got home the sun was shining and I was back to my usual cheery self. I will get the new CA125 result on Wednesday morning and hopefully have chemo the same day.

Take care and feel well,

Love lizzie xx